Should I be concerned?

One thing that might help is to ask the doctor's office to call you if they have a cancellation or opening. Every office handles these in their own way, and some aren't very organized, but they all get cancellations. You might ask them what would work best to get in sooner.

I'm sorry you're going through this.

I actually did that, but then thought that perhaps I'd be better off with the steroids since I still had to wait and started taking 3 again. I'm not so sure that was a good choice now since reading all of the side effects that accompanied the new script.I'm so confused right now, I don't know what I'm doing. Too much on my plate.

Steroids are troublesome medications, but they tend to be very good at enabling you to live your life, at least for a while. Try to enjoy the benefit they are providing, and remember that no one gets all of the side effects. I was on steroids for years, and really just had weight gain and increased appetite. Good luck!

Thanks so much, Scott, I appreciate your reply so much. Unfortunately, with me I don't have an increased appetite, and actually have lost it completely. Of course, that could be just my wonderful nervous nature popping through. If I could be assured of the fact that I wouldn't have any side effects, I don't think I'd be so nervous, but I guess no one can be assured of anything in life, and I am truly aware of that after what's happened to my very healthy husband. I'm the sick one in the family, or so I thought.

I really didn't have any side effects on the first go around, other then, as I said before, a loss of appetite, and couldn't sleep, but I definitely benefited by it since my husband was so ill and I needed to be there for him. I guess when I bruised myself yesterday and noticed how thin my skin had become (and it's not even healing as yet and still bleeding) I became a bit frightened that I'd have other side effects as well. Of course, I'm hoping that will be the end of it and nothing else will happen.

I'm sorry that your husband is so ill. You really do need to be in top form right now.

Since you never did get a definite diagnosis have you thought of seeing a different GI and by that I'm thinking of an IBD specialist? Maybe your doctor is an IBD specialist. My GI referred me to Mayo, it is close to where I live, when he and my surgeon couldn't get my cuffitis under control. He said that he took care of the entire GI system and wasn't an IBD specialist. Maybe there is a University or other hospital close to you that has IBD specialists you can get into quicker than October. If I were you I'd explore that avenue. I know you have a full plate now but regardless if the medication is the right one for you or not the diagnosis wasn't followed up on. Did he test to see if you had problems elsewhere in your system? CTscan with barium or whatever tests they do for that? Pill CAM?

As Scott said another 3 months is not likely to be too bad for you but I hate steroids - period. You need to do what you need to do to take care of your husband at this point in time.

One more thing. All doctors have acute appointments set aside for patients that are ill and need to be seen ASAP or today. Have you gotten past the front desk and talked to his nurse? If not, call in and ask for her/him. Don't let the front office screen your call by asking you why, just tell them it's to complicated to explain to them to relay to her, which is TRUE. Tell her of your problem and how bad you need to see the doctor, your husbands health problems, your job loss, drastic weight loss (that always concerns them), how bad you feel and how you need to get control of your health as soon as possible because you can't both be so sick. Lay it on thick! If they don't come up with an appointment soon - they are heartless.

Thanks, TE Marie, you're absolutely right. I have never really felt well since my surgery in 2001, but have just gone about my business skirting the issues and dealing with what I had.

I did have some tests done and that's when it was decided that I "might" have Crohn's and that they would try the steroids before moving on to something else. As far as I know, the doctor that I'm seeing is an IBD specialist, but I'm not 100% sure. My original doctor who was the best around, has since semi-retired, however, I asked the doctor that I'm using now to speak to him about my issues, and he agreed with everything that they had suggested.

I don't think that steroids are the answer for me, I just needed a cane to lean on until I can get through some of the issues that I'm facing now and then take the time to take care of myself, but obviously, it can't wait. I have not been feeling well even when I'm on steroids, but at least they help me through the day.

We went to dinner last night and I came home with my usual symptoms that feels like a partial blockage but just not as painful, and went to bed with a heating pad on my stomach. I know that I am not emptying properly and that's part of the problem. I woke up in a total mess, which is never fun. I also have cuffitis and can't seem to get it under control like you. I guess it's come down to the fact that I will have to contact the doctor again to discuss some of these issues as soon as possible. It just can't wait until October.

Thanks for your suggestions, I'll be making a call to the doctor tomorrow.

I have chronic cuffitis and use Canasa suppositories everyday, or as close to everyday as I can. I don't know if you use Canasa or not. Hopefully you do not have it all the time.
Whatever you use I hope you have it to use as cuffitis probably explains all or part of your bad case of butt burn.

If your GI is treating patients for other problems, like gallbladders, I doubt he is an IBD specialist. Our state University Hospital and Clinics has IBD specialists for example. Mayo's is an hour further than the state and my doctor likes Mayo better, he did his training there, so I went there. I love it there too.

We just found out that my husband has prostate cancer. His treatment hasn't been determined yet but I can imagine some of the stress you've been under. I think stress affects IBD and we clearly still have it with cuffitis, UC and whatever is going on with the other inflammation in and out of your pouch.

Good luck tomorrow Mema!

TE Marie, I was just going to respond back to you to ask you what you were using for your cuffitis, and found your message. I had been using Canasa and then stopped. Just started using it again, and I haven't found that it has helped very much at all, and it certainly hasn't helped with the butt burn.

My surgeon has taken care of all my needs to this point, and he has been great. When it was discovered that my intestine had narrowed he sent me to the GI doctor and told me that he was very familiar with J pouches, and I took his word for it. If I don't find that he can help me, at that time I will ask for a second opinion. Boston has such great medical care, unfortunately, I just have to find the right doctor for me and my problems, hopefully this guy is the right one. I'll know soon enough I guess.

I had a piece of raisin toast for breakfast this morning with peanut butter and started to get pains. Beginning to not want to eat - it's no wonder I'm now down to 95 lbs.

I'm sure that stress plays a huge role in IBD - my problems actually started when I found out last November that I could possibly be losing my job and just got even worse when my husband got ill. It's been a difficult time for both of us.

So sorry to hear about your husband, and I'm sure that it's been very difficult for you, so you take care of yourself. There are so many wonderful advancements being made with prostate cancer and hopefully he will find the help that he needs.

Thanks for your support!!

95 lbs is so small you need to eat. I know that feeling because I lost a lot of weight fast. My surgeon initially prescribed Anucort for my cuffitis and I went to my GI of 14 years. He put me on Canasa and also did a scope with biopsies and did a stool sample finding c-diff too. Neither one made cuffitis go away and I was on canasa the longest as it is mesalamine. That's when he and the surgeon agreed to send me to a specialist. My surgeon trained a the Cleveland Clinic but didn't know what to do with a case of cuffitis that didn't go away, like my Mayo trained GI.

The answer was to take Canasa until it worked from my Mayo GI. I lucked out and got the doctor that I went to in 1997 for a second opinion and he is the Director of the IBD Clinic at Mayo's now. He asked questions neither my surgeon or my GI had asked before, it was like he had a j-pouch himself. I felt a lot better after going there. He said to take it until it worked, which was just 2 months. Then to take it every other night and if it stayed away to take it every 2 and so forth. Some people take it twice a week to retain remission and some people are fine to go off of it. Unfortunately I need to take it as close to every night as I can and sometimes I take Anucort as well. One in the morning and the other at night. I was off and on medication from mid January until mid August for Cuffitis and C-diff in 2012. Not a banner 2nd year with my j-pouch. I had them the end of 2011 and just suffered thinking the first year was supposed to be bad! Enough about me.

There are other treatments for cuffitis - canasa is mesalamine, the main ingredient in Asacol and a other medications we took for our UC. The benefit now is it is applied directly where the UC is and doesn't have to go through our digestive system.

I stay away from the spicer foods when it flares too. If Canasa hasn't worked in the past what has? I wonder if it has something to do with what is going on at the top of your pouch? Did your doctor biopsie there? My doctor takes biopsies in my small intestines above my j-pouch during pouchoscopes. Maybe your results were interminable. This just sucks.

Keep using the calmoseptine, I carry a tube in my purse bathroom kit and there's a tube in every bathroom cabinet in the house. We have to use everything we have. Wet wipes, bidets, sprayers, etc.

Thanks for your words of encouragement. My husband is in his early 60's and has never been sick a day in his life.

Please eat, yogurt, soup, ice cream whatever you can.

Thanks again for your response. You sound like you've been through a lot yourself. You certainly were lucky to have found such great doctors. If I had money I'd go to the Cleveland Clinic, but unfortunately......I hope that the doctor that I'm seeing will know what to do with me, if not, I'll definitely go elsewhere. I can't live like this, it's so darned uncomfortable.

About the only thing that the canasa does is badly stain my toilet seat. When I wake up in the middle of the night to go, I sometimes don't see it if it has splashed and by the time the morning comes it's a permanent stain that won't come out with anything that I use. Any suggestions besides bleach?

Calmoseptine has become my best friend, and I, too, have a tube everywhere, including wipes which I keep in my pocket book as well.

We just got back from shopping and I didn't bother to have lunch because I hate to eat and leave the house. I'm bathroom shy and would prefer to use my own bathroom. Crazy, I know, but I hate public bathrooms unless it's absolutely necessary, and the smell from the steroid is absolutely nauseating. I'll try to eat a good dinner tonight. I seem to be losing more weight when I'm on steroids, just the opposite from other people. I'm so darned unpredictable. I've been trying to drink Boost, but no weight gain.

My husband had never been sick either - we're in our early 70's, and what a surprise when he was diagnosed. It's a death sentence for sure, although the doctor said he was not God so can't really predict what his life span will be. He's been through so much between surgery and chemo. They, by accident, the doctor touched a nerve by his vocal cords, so now he can barely talk and is facing having them repaired. Wonder why I'm so stressed?!

Mema, I sent you a PM a while back. Please look for it

TE Marie, never received you PM - would you send it once again? Thanks!!